Hi lupies (I know, we can't be defined by our disease(s) but it works here),

I have noticed that quite a few of us take gabapentin (neurontin). I know that it is prescribed for many different reasons. If you have ever taken this drug, would you mind sharing why you were taking it and if you found it effective.

I'll go first. I have been prescribed it to help me sleep, as an anti-anxiety med and as a migraine preventative. It has helped me sleep IF I also happen to take a tylenol pm. It has done nothing for anxiety or for the migraines.

I'm curious about this too. I am taking 25mg of clobazam (used for my seizures. but it's also an anti-anxiety). The drug is a benzodiazapine. Or mild tranquilizer. VERY, VERY addictive. This class of drugs basically replaces the brain's natural source of GABA. One of the "feel good" hormones that helps with anxiety etc....

So I'm tapering off of this medication because of its addictive nature. I've been on it for 6 years which is a really long time. Especially at these high doses. In order to help my brain remake the GABA on its own, I have to taper super slow. 2.5mg every 8-10 weeks! So I have a long way to go. I've already come down 10mg since last June.

I've been considering adding supplimental GABA to my regime as well. Just to make the taper easier on me and maybe faster. I get a lot of anxiety 2 weeks after I taper down. It's horrible. This stuff is evil. Never take a benzodiazapine folks.... I'm so angry I was put on it to begin with. I had no idea what I was getting into....

So I would also love to hear how others find this GABA stuff working for them! Emmi, I'm glad you brought this up! Interesting that it hasn't helped your anxiety..... Hmmmmm.

Ginny

I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

I took Neurontin for a very short time for a horrible nerve problem I had that caused me to feel miserably prickly\itchy all over. It was so bad for so long that I couldnt sleep, I was miserable. My neurologist thought it may have been peripheral neuropathy and tried the Neurontin. It didnt work very well, and made me gain weight and have incredibly vivid dreams. I think I took it for two months before stopping last summer. I wouldnt take it again. I have heard that Lyrica works much better with less side effects, but I cant say for sure since I have no personal experience with it.

Ginny, I have to second your statement on the benzodiazapenes. I took Ativan for over a year. Thats back when I was going through the first of my illnes... you know, when the doctors try to tell you that you are depressed and its all in your head. I tried to come off cold turkey. I had no idea how dangerous that was. I remember having the worlds worst headache for four days and getting injections in my neck of steroids and lidocaine for the pain before my Neuro realized what was happening. TWO HOURS after I took a dose of Ativan, the pain and sick feeling was gone. My Neuro weaned me off of it for over six months and I will never allow anyone to prescribe me a benzo again.

Thanks for the great information!!! The LAST thing I need is to gain weight from another med, or have more vivid and intense dreams. I'm a dreaming nut-case...Must be the BENZO!!!!!! Hehehe...

So that is very interesting to know that Lyrica might be a better alternative. It's used quite frequently for Fibro. The gals in the fibro forum talk about it a lot. Some have success on it, others don't. Pretty much par for anything we take, right!

I was taken off my benzo cold turkey last May. I was in the seizure monitoring unit at the hospital for 5 days. They wanted to see how many and how severe my seizures were when I was off the medication. GREAT LEAPIN' LIZZARDS. I was a disaster on the 2nd day. I went from 35mg to 0. I thought I was going to lose my mind. What a horrible situation. The nurses didn't even consult the neurologist. They gave me my meds to take again. It was that bad..... So I can TOTALLY relate to your cold turkey taper!!

BENZODIAZAPINES =

That's from me and Victoria, everyone!

Anyone else want to chime in on Neurontin/GABA?

GinnyI can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

As for Neurontin/Gabapenton . . . I took it in a mild dose (don't remember the mg) for a couple months to help block some nerve pain which I feel in my hip. I did sleep very well initially so that was a plus . . . but it didn't control the nerve pain (still stuck with that) so I stopped taking it after a three month trial.

What has been the most benefit to the nerve pain (I think it is a pinched nerve in the spine) has been very calculated "nest" in my bed. Strategic placement of warm grain bags (corn bags heated in the microwave) and the affected hip/leg supported by a long pillow etc., etc. I am actually sleeping a nice 4 hour block most nights. . . . which is huge fore me. I do sleep longer than 4 hours, but getting that sleep in a continuous block is very healing. So I'm thankful for the cooler temps so I can use my corn bags.

Blessings!

In His Grip

AlwaysRosie "We can't control the waves, but we can learn how to surf!!"

Ginny! 35MG?? I was only on 10.... I cant even imagine what you went through! <<<HUG>>> Bless your heart. Praise God that He got us through that.

So funny Rosie mentioned the "nest". My daughter Lindsey calls mine the "Rabbit Hole". Sometimes she will go in and get my pillows and heating pad ready for me. She knows exactly how they need to be placed. If I sleep the wrong way, my legs ache like toothaches for days, and I end up with a bout of costochondritis. Not fun. I am dreading replacing our king size mattress, but its going to have to be done this year. I think I will start a thread about that... if anyone has any ideas.

Ya, 35mg. And the stuff wasn't controlling my seizures either. I'm down to 25mg now. It's been a very slow process! I keep praying to God, saying, "God, you are my anti-depressant, not this drug!" Hahaha. Someday I'll be free and clear of this crap.

You know Victoria, once you get that new mattress, your "Rabbit Hole" might be a lot smaller!!! An old mattress can do a lot of harm on a back. A new mattress feels sooooooo good!!!

GinnyI can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

I take a total of 1700 mg of Neurontin per day. I have moderate/severe small fiber neuropathy in my feet and lower legs. The neuropathy is caused by my Crohn's disease [a rare extraintestinal mnifestation of the disease]. I slowly titrated up from 100mg to my current dosage to lessen sdie effects - primarily dizziness and sleepiness. I have been taking Neurontin for 4 years now. In combination with Tramadol, it controls my neuropathy pain. It can cause edema in the legs but I discovered that drinking lots of water reduces that problem. during this time I have lost 50 pounds so obviously it did not cause weight gain in me.

My neurologist wanted my to try Lyrica because it is thought to be superior for the pain control and I would have to take fewer pills. He titrated my Neurontin down and titrated the Lyrica up. It was a nightmare for me. It made me very lethargic and when I did come out of the stupor, I wanted to saw my legs off at the knees. Lyrica did not control my pain. I do know others that have had great results with Lyrica.

I should add that the one thing that I am sure gabapentin does help with is the suspected neuropathy in my feet. Since taking it I no longer have the symptoms. I also should amend that this drug is also used (again off-label) for fibromyalgia. I forget that I recently was diagnosed with that. The diagnosis coincided with a dosage increase of the gabapentin. My fibro pain is less than it was. Tramadol helps with the rest.

If there are anymore neurontin/gabapentin folks out there, plz join the discussion! Thanks.

Time for the Flake to chime in. I've been taking gabapentin as needed for pain about 4 years. I've tried several other non-narcotic drugs for pain in various combinations, but I keep going back to 1200mg gabapentin. Currently, each day, I take Celebrex twice daily, Arthritis Tylenol twice daily and 1200mg gabapentin when those don't work. I take gabapentin 3-4 days per week. There are days that gabapentin doesn't stop my pain, but I'm still able to refuse narcotics. I tried Lyrica a couple of years ago and cast it aside. I asked my rheumy again about it and was told that I never reached the dosage recommended for fibro, so I'm trying it again, but I still take gabapentin. Yeah, even though I bi#*h about all the meds I take, my med list is in constant flux. As my signature reads, "Better living through chemistry."Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS

I've been taking Neurontin for several years to help my restless leg syndrome. I was prescribed 2,000 mg a day to be taken at night. I recently cut my dose to 1,000 mg in an attempt to wean myself off any meds that I can and to see if it would help me regain any energy during the day. So far so good. I take it 2 or 3 hours before bedtime and it slowly relaxes me and helps my legs. I'm sure it helps me sleep as well. I wish I could take small doses during the day but it makes me too tired.

I took valium, a benzo, a few years ago for situational anxiety and I learned first hand that depression can be a side effect of the valium. Fortunately I haven't had a reason to take a benzo since.

I believe I've finally found the solution to my migraines. My PCP prescribed Imitrex, to be taken immediately when I feel a migraine coming on and it works like magic for me. If the migraine doesn't go away within 2 hours I can take another one. I get horrible ice pick migraines and until I tried Imitrex I had never taken anything except pain killers and while they help mask the pain they don't take it away. The Imitrex does. Have you ever checked into it? I know there are lots of other drugs prescribed for migraines but I don't know anything about them. Good luck. Migraines and anxiety can both be so debilitating.

I take a really low dose of neurontin and started it because I was having peripheral neuropathy in my hands and feet. My pcp prescribed it for me and it helps a lot with the neuropathy and also helps me sleep. I was supposed to work up to a dose between 300-500mg which is still considered low, but I couldn't tollerate much over 200mg, so that's where I stay. I don't think I'm at a high enough dose for it to help my headaches or anxiety though. On one of my visits with my rheumy we decided to see how I did off the neurontin so I could ge rid of a med, but the burning pain came back in my hands and feet, so I went back on it.

Crumbs!!! Or all the christmas dinners wrapped into one! What an interesting thread!I taken 900mg Neurontin for the severe pain in hands feet, joints, knees and calf muscles. Am unsure if it does much, but it does help a bit. Nothing for the burning sensation in hands and feet though.I taken the odd Valium 5mg when the jigs and jerks and the sleepless nights get too much. Not only does it do something for ?anxiety etc, but next day feel much better. But I take it once in a blue moon.I didnt know about how slow some of you folk are coming off this cos I did come of Tranxene another Benzo I was on for over 28yrs and did so myself in a very short space o time and also came off antipsychotics (Major doses) for same period of time in an equally fast time span. Never was psychotic in my life.Since I got ill in 05 about two years off all psych drugs. I do not sleep but get something - I must!about 3/4 hrs but I have not dreamt in roughly three years and I had a fab, funny, hilarious dream life. I am like a dead stone now!about 'nesting' this was the oddest part of the thread as I do the same. I sleep now on a fleece throw and the pillows are piled under my knees and sometimes along the side of my back if I decide to sleep on side. Wheat bags on neck, or side of face and defo around middle (wheat sausage!) Oh the feet are stuck out o the bed even if it is zero in temperature.ALSO since getting sick, window wide open, summer jammies and a duvet and I never feel the cold whereas I loated winter for so many years for that very reason, not anymore. I function better in every way in colder weather, even the walking is better. I have a temperature contol prob now.Any more nester and burrowers? Oh I got a chihuahua recently, they ( in the literature) love to do the same! Mine is no exception, very funny really, even if its only her head buried like an ostrich!xAnnAnn Ireland

Ann,I am so happy you got a chihuahua, what is her name? And I worried that my schnoodle Wilbur would not get enough air to breath if he sleeps tucked under like he loves to do. I just happened so read a vet column that said that they do get enough oxygen. I only tuck Willie under my top quilt.sueGod knows, even if I don't....CNS Lupus 2005, APSMeds: Plaquenil, Neurontin, Thyroid, Voltaren, Aspirin, Atenolol and Norvasc, Prednisone prn.

I'm on my 4th day of Gabapentin for fibromyalgia. My doctor advised me to take the first capsule at bedtime and then in regular intervals 3 times a day from that time on. Each capsule is 350mg. After taking only two, I was quite dizzy and felt "out of it". That same day (a weekend and also pcp on vacation) I called my pharmacist who advised maintaining the dosage for a few days. If my symptoms worsened, to try taking only one capsule a day.

Today is my 4th day of taking 3/day, and my leg pain is excruciating! I can't believe I actually asked my pcp for this drug!! I had been taking Percocet for the pain, but he wanted me off that to avoid addiction. So, I'm really not sure where to turn now. From reading the other posts, I can't quit cold turkey, but should wean myself off. Any recommendations for doing that?

I take my neurontin (2,000 mg) at bedtime and it dos make me feel drowsy but I can still function. I believe that if I took 350 mg during the day I could function but it would make me feel drowsy. I'd listen to my doctor and call my pcp when he or she gets back in town. If you can't tolerate it, can you find out if your PCP has another doctor on call while he's on vacation? They usually do. I hope you get some relief. They usually won't keep you on percocet long term. Good luck.Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin

I was on a gradually increasing dose of nuerontin for hand and foot pain. At first it worked great for about a week, then nothing, we upped the dose, great for a week then nothing. Upped it agian and was great for about 5 days, then nothing. Got up to 2400mg a day and it quit working all together so now I'm off it. Very frustrating. Rheumy thought I had fibro instead of lupus, turns out I probably have both.

I take klonopin and love it. So far, its been the least destructive to my liver, with the least side effects and most effective drug. I take it for anxiety, restless leg, and mild sleeplessness. I have been on the same 1mg dose for a bout 5 years now. I know I'm probably dependent but don't want higher doses, but then I'd be addicted to neurontin pretty bad if I took it that long, and seeing people go off neurontin in the mental ward was really bad. If they weren't nuts before, they were after. Also had bad liver problems from it. I don't like the drug, and I 've taken gabitril and lyrica, both really hard on my liver and I ended up having allergic reactions to them, they didn't work well either. I don't care for how they manipulate the GABA, but for those who can't take anything else and it works for them, its good. My son has epilepsy and went completely nuts on neurontin, not only did it put him into seizures, but caused him to suddenly become out of control psychotic and he tried to light himself on fire. He was not himself for sure and it was horrible. I have read so many bad accounts about the drug I wonder why they don't take it off the market and we probably should have sued, but it seems to be the thing to push on middle aged women with multiple health complaints. And for some it works. It does cause long term changes in the way your mind works, like all the new psych drugs. i guess it just depends on how well your liver works and how well you tolerate the stuff, but with the advanced liver problems I've seen in long term users and their rotten attitudes when they don't have it, I'd rather die than take it.

My benzo has been helpful in coming off long stints on narcotics, and I have gone without. While it's not pleasant, it wasn't anything worse than coming off narcotics for me, but then I take a low dose. I don't enjoy coming off psych drugs like neurontin, they are very unpleasant and even dangerous to stop. My mother is bipolar and she enjoys neurontin. It hasn't improved her mental state really, but she likes taking it. But she takes a lot of narcotics and other stuff too for health reasons. Klonopin is the only benzo I can take without getting depressed. I've gone off it before after years of use, and it wasn't too horrible for me and it was nice to not have my personality messed with.Love, Marji

--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"

Hi there, I take neurontin 900mg TID for seizures, neuropathy, and fibromyalgia..... It doesn't help me sleep but it does prevent the seizures and "passing out spells" that I use to have. I've been on it for about 7 years -- started by my Neurologist and now continued by my Reumy.... I didn't have any weight gain from this -- only the steroids -- and no real negative side effects.God Bless everyone that has to go through this disease.....

I take Lyrica for 3 months now which is a form of Gab. I have gained 15 lbs and have the itchies all the time. But...... it helps with the pain and fatigue of Lupus/ Fibro. I am also on Lexapro, Plaquenil, Prevacid and Prednisone....

As far the anti-anxiety, I am a lot moodier since I began to take it and it does not help me with my insomnia issues. I wish you well with it, you have to try it out, all pts are different. Lupus stinks!

gosh, what a surprise to see this old post turn up. But hey, thanks! It's always good to hear more input on a topic. You are absolutely right that all of us are different and respond differently to the same meds, etc. Neurontin has not been helpful to me at all for anxiety. I can still get going pretty good until I remember that I have learned a good relaxation technique --for me-- and have actually gotten pretty good at it. On the other hand it is still working for me as it helps me fall asleep and also with the neuropathy in my feet.

Thanks again for breathing life into an old topic and welcome to loopie--oops, lupie land! You are sure to like it here Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia

I am so so thankful for neurontin! I take it for peripheral neuropathy; without it, my legs, feet, hands hurt, burn, tingle, etc. so much that I can't sleep (or function well). I take a high dose (I guess, reading the preceding posts!): 400 mg TID and three 400 mg at bed time. I've not been taking it much during work hours (sleepy), but I have new tingling/buzzing in my arms and face, so will try that while I make an appt to be seen. :(

Very interesting to read all these responses. Clearly it seems to work for some and not for others. I was put on it for fibro pain in 05- lasted a month - before quitting. I started on the lowest possible dose - which I later learned actually results in greater bioavailability than some of the higher doses. At any rate - it didn't help much with pain, but I felt lethargic and depressed and had nightmares, along with weight gain - which just seemed to add to my problems rather than reduce them. Rheumy felt that Lyrica probably would not work for me either, since it is in the same family as Neurontin. I have problems with all kinds of meds, though - very difficult to take anything - so I'm probably not a good "test case".

Well I am glad to see that neurontin/gabapentin does help some people. I take Lamictal and Gabapentin (1200) which my pdoc said was the recommended dose to take as a mood stabilizer. I did not think that gabapentin helped any and I went off of it. My husband said he noticed a difference as far as my anxiety and sleep. So it is hard for us to see ourselves and it helps to have someone else's perspective. I am now going back on the gabapentin. I just wanted to share this with you guys